[Image shows three spoons on a laptop in the background. Overlaid is a white torn notebook paper with a red paper clip. Overlaid is black text that reads “Thanksgiving Break and Health Updates” below is a burnt orange leaf and in red text “Thee Crohnie Grace”]
College has been keeping me very busy. Between writing and giving speeches for Communications, constant studying to keep up in Biology, art projects on top of art projects, and math (which speaks for itself). While I have been busy, it has introduced to me to a new passion, which is ironically genetics. Ever since I was into X-Men I was interested in genetics. My 5th grade science project was on mutations and punnet squares.
Now in college bio, I have gotten to explore it even more, doing DNA sequencing, making mutations, doing genotypes and phenotypes. It has been so much fun.
Luckily though I have gotten to take an early break, since I had to go to Cincinnati on Thursday for an MRI and an appointment on Friday I got to start my Thanksgiving Break sooner than later. Which has been greatly needed.
[Image shows 3 photos, the first is of my lower leg covered in bruises. The upper right is me reaching up my back with my hand and subluxing my shoulder, and the lower right is my ankle and foot in the tub at a funky angle.]
Over the last couple months I have been dealing with anemia, throat pain, and just in general being in pain and exhausted. I had a throat ultrasound done to check my thyroid which revealed nothing. Had a gallbladder ultrasound which also revealed nothing. So I kept going about my normal routine, adding more tylenol to the mix of meds to deal with the added pain with no answers.
[Image on the left shows me with day old makeup and messy hair in a striped sweater and white tank top, I’m holding as many of my meds in my hand as I can fit. Image on the right shows me with my opalite choker, messy hair with glasses, feeding tube hooked up, and port accessed wearing the same clothes as in the previous photo.]
I got my second round of Entyvio with home health. My doctors had decided to move the infusions up to every 4 weeks, which was fine because I had friends there to keep me company and watch The Little Prince with me. Raynette (my home nurse) took some labwork when it was all done to check some liver enzymes and my sed rate to see if the Entyvio was doing it’s job.
Before I left for Cinci I got those lab results back, I was still anemic, my sed rate was within good levels, but it appeared my ALT was high, which is a liver enzyme.
So Thursday at 9am we took off so we could get to Cinci in time for my MRI at 2.
[Image on the left shows me in the car, hair pulled back into a green beanie, glasses, I have mint green headphones in, feeding tube, opalite necklace, and a t-shirt with a large black sweater over it. Image on the right shows Cinci Children’s from the parking lot.]
We got there a bit early and signed it. The original plan was for me to pull my NJ tube, put down an NG tube for barium contrast dye and then remove the NG tube and replace the NJ tube the next day after my doctor’s appointments.
One of the nurse’s working, Gail, was super excited by the fact I could put down my own tubes, and called me her perfect patient. She said I was her birthday gift because it was her birthday. She was really sweet.
I told them I had a port, so they didn’t need to start an IV, but since they only had one medicine to push for the MRI they didn’t want to access my Port. So while they got other stuff ready, Gail tried to start an IV but didn’t get it. She told me she wasn’t going to make a pin cushion out of me and called the VAT team to bring in an ultrasound to find a vein, and said if VAT couldn’t get a vein then they would use my port, but luckily VAT was able to find a good vein deep in my arm and despite IVs being way more painful than getting a Port accessed, she managed to get it.
And with that, Gail brought me some good news. She said that since I had given her a gift for her birthday that she had a gift for me, they wouldn’t be pulling my NJ tube. Since they were also using IV contrast, she said it wouldn’t be necessary to pull the NJ tube because they would still be able to get good photos. And that the small metal weight wouldn’t present a problem.
So with that they brought in the nasty sad-flavored barium contrast and my mom helped me push it down my tube because the big syringe was hard to push.
After about 40 minutes of pushing barium and constantly running to the bathroom because that stuff went straight to my ostomy, I had gotten down the two bottles and we were ready to go do my MRI and in my case watch some Finding Nemo to avoid feelings of claustrophobia and cleithrophobia.
Honestly it was the shortest MRI I ever had, typically I can finish a movie and half of another. But Thursday I didn’t even get to finish Finding Nemo before it was over. Though it was still after 5 when we finished.
Afterwards I got La Rosa’s breadsticks because we don’t have a La Rosa’s in my town and they are so so so good. My mom ate half of it, which was fine because we also went to a little pub called the Cock and Bull which has amazing spinach artichoke dip and I got to enjoy a bit of that too before pain and nausea kicked in, but it was totally worth it, would have done it again.
We explored main street a bit, but basically everything was closed. So we went back to the hotel and I worked on my biology homework, took a bath, and then went to bed. Although admittedly I got zero sleep because my mom snored all night. I love her to death, but that night I was a bit tempted to smother her to get some peace and quiet (I love you mom ❤ Haha).
Friday we were up and moving by 6:30 to beat Cinci traffic and get to the hospital for my appointment, luckily we would be getting out early since I would not need to be staying to replace my NJ tube afterall.
The appointment went very smoothly. I got a referral to the geneticist at Cinci for my EDS, got a referral to a rheumatologist physical therapist to work on my joints as it is my most pressing problem lately, and the MRI showed remission of my Crohn’s! Which meant that we could talk about getting a surgically placed feeding tube as opposed to the feeding tube that goes down my nose.
Over all I was very excited to have my doctors listen to me and my concerns. They asked me about ileostomy reversal which I told them I had no desire to have it reversed because it had made my life so much easier. I didn’t have to worry about fistulas and it had made my disease so much more manageable.
On top of all of that they went ahead and gave my my flu and pneumonia vaccine and ordered some more labs to check all my vitamins and more on my liver because my doctor said low vitamin D could also create the high ALT levels.
[Image shows 4 photos of bandaids over my forearm, arm crease and on both of my upper arms.]
Luckily all my other labs came back normal so I get to continue my Entyvio treatments since they are working! And with that we got to go home, which I slept the entire way back due to the lack of sleep the night before.
And now it’s Thanksgiving Break! I’ve been doing some crafting, got plans with family, and I have some blog topics I plan to cover while I have the free time! Things have been a bit of a struggle but I’m keeping up and don’t plan on letting it drag me down anytime soon!
Thank you guys for reading and being patient with my updates, and I hope to have some more posts for you over the next couple weeks as the semester wraps up! 🙂